Dad fighting for daughter's life Portsmouth teen has rare, deadly form of epilepsy

Wednesday

Jan 23, 2013 at 3:15 AMJan 23, 2013 at 4:40 PM

By Michelle Kingstonmkingston@fosters.com

PORTSMOUTH — Still unable to tell his baby girl that she may not live to see her 25th birthday, Al Merrill plans to take his daughter, Chelsea, to Washington, D.C., to advocate for rare diseases.

During the last weekend in February, Chelsea and Al will attend the Rare Disease Conference at the National Institutes of Health, which brings awareness to diseases affecting fewer than 200,000 people, such as the one Chelsea has been battling for the past six months. Al said he is currently working with Sen. Kelley Ayotte's office to schedule meetings with Washington delegates while in the nation's capital.

“They are going to hear me coming,” he said. “I don't have time to wait around.”

Chelsea, 16, was diagnosed with rare, degenerative Lafora disease, a severe and deadly form of epilepsy. Doctors say, at best, she will live for 10 more years.

“Even if I don't speak specifically on what I'm going through, I want to speak for any kid in the state that needs help,” Al said. “I'll try to be a voice for all of them. If I don't advocate for these children, who is going to?”

After a number of tests, Chelsea was diagnosed with Lafora disease and has spent months in and out of hospitals. She is beginning to lose her ability to speak and walk. Getting dressed and going to the bathroom on her own is becoming increasingly difficult as the seizures continue.

“It is getting to the point where she can't do the stairs,” Al said, explaining her disease is rapidly worsening.

Chelsea had been staying at Crotched Mountain Specialty Hospital in Greenfield and was released earlier this month, but has been back to the hospital on three different occasions because of seizures that continue to affect her.

“We can't stop them all,” Al said. “I wish we could make it all go away.”

As Al tries to settle his daughter back into their home in Portsmouth and schedule visiting nurses, he continues to struggle with bills and the harsh reality his home is not handicap accessible.

“We are trying to look into moving. Our home is not big enough. I need a bedroom and a bathroom on the first floor for her,” Al said, adding that it has been difficult finding a landlord to work with his daughter's needs and their Section 8 certificate.

“Doctors said she needs to move as soon as possible,” he said, while worrying about his other children enrolled in Portsmouth schools that will have to move to new districts, possibly in Rochester or in Maine.

“It's rough,” Al said. “When do you get to go to work? When do you get through all the red tape? How am I going to pay this bill and that bill? I never expected it to be this way. It's crazy.”

Although Al and his wife, Melissa, have yet to tell Chelsea exactly what she is facing right now, and the fight she has ahead of her, Al plans to bring Chelsea to D.C. to represent the state of New Hampshire and gain support.

“If I have that little girl in front of them, they have to wake up and realize that there are kids suffering,” Al said. “If I can get their attention, I might get the audience that I'm looking for.”

“The ideal scenario coming from D.C. is me being able to talk to Congress and talk to the Senate, or even the president or the first lady and say, 'We need help,'” Al said. “We are all worried about all of this stuff, but what about this? Let's have something positive come out of this.”

Al would like to eventually start a nonprofit in New Hampshire that provides resources for families such as his who are searching to find answers to questions that have been suddenly sprung upon them. Once the nonprofit is up and running, Al would also like to see a facility built in New England specifically geared toward rare diseases.

On Feb. 2, the American Legion Post #6 at 96 Islington Street in Portsmouth is hosting a fundraiser for Chelsea and her family. For $10 at the door, the public can support the family, enjoy food from Mojo's BBQ and Subway, dance along to a DJ, enter raffles for prizes, including a digital camera, horseback riding lessons, makeup lessons and gift cards to local area restaurants and hair salons, and sip on beverages from the cash bar from 6 p.m. to 11 p.m.

If you are unable to attend but would like to support the Merrill family, you can donate at http://www.youcaring.com/medical-fundraiser/Chelsea-s-Hope/36942#. UMkLgbofpiJ. Facebook.